UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013

October 11, 2013

UK CFS/M.E. Research Collaborative Executive Board
Summary of Discussion 7th October 2013

Dr. Esther Crawley (EC), Bristol University – Vice Chair (Chair of meeting)
Sonya Chowdhury (SC), Action for M.E. – Secretariat
Dr. Charles Shepherd (CS), M.E. Association
Mary-Jane Willow (MJW), Association of Young People with M.E.
Professor Peter White (PW), Barts & The London school of Dentistry & Medicine
Professor Paul Little (PL), Southampton University
Professor Hugh Perry (HP), Southampton University
Jen McKendrick (JM), ME Research UK
Professor Paul Moss (PM), Birmingham University

Observers Present:
Joe McNamara (JM), Medical Research Council
Neeha Isaar-Brown (NIB), Medical Research Council

Professor Stephen Holgate (SH), Southampton University
Clive Kerfoot (CK), CFS Research Foundation
Ed Sykes (ES), Science Media Centre
Peter Muir (PM), CFS Research Foundation
Dr. Neil Abbott (NA)
Professor Julia Newton (JN), Newcastle University
Zoe Gotts (ZG), Northumbria University

1. Welcome & Introductions

EC opened the meeting and gave apologies from SH who contacted the Board this morning to say that he was unwell. EC informed the Board that ZG has accepted the invite as an early career researcher although was unable to attend this meeting.

2. Research Priorities

All five charities have submitted their priorities which included the top five priorities identified by nearly 1,000 participants to Action for M.E.’s survey, where 90% of the respondents had M.E. During a conference call over the summer with a subgroup of the Board, it was agreed that SH will work to pull these priorities together to inform the Collaborative’s work.

There was a strong need identified for work with, and including, people with severe M.E. as research with this patient group is lacking. Action for M.E. is in the process of replicating the survey with researchers as part of their consultation to inform their Research Strategy and will report back results to the Board.

It was agreed to look at other organisations such as the MS Society where there has been effective collaborations between patients and researchers in driving research work forward. There was a lot of discussion about how the Board might take this forward.

3. Membership of the Collaborative

Applications for membership were considered in accordance with the criteria for the relevant type of membership. It was agreed that if there was a query regarding meeting the criteria, the applicant would be asked to provide further information to support their application. A separate bank account has been set up. The Board also discussed its commitment to having a Patient Advisory Group or equivalent to enhance more collaborative working between patients and researchers.

4. Annual Science Conference

There is a small conference planning group that has been formed and a venue in Bristol has been booked for 1-2nd September 2014. The purpose is to explore how to drive and generate more research and to work more collaboratively. Ideas were shared for the focus of thematic workshops on such as genomics, diagnosis, treatment, cognitive dysfunction and biobanking.

There will be a patient/researcher joint session focused on how researchers and patients can work more effectively together. It was agreed to identify leading researchers in and outside of the field to invite and engage with the event including international experts.

Costs will be covered by attendees with a financial contribution from MRC. There may be additional costs, such as fees such as supporting patient participation that the charities could consider but this would need to be looked at in more detail.

Further consideration will be given to live streaming.

5. Press and Media

SC agreed to liaise with ES to organise a meeting for the SMC with the charities.

6. Next Meeting

19th December 2013.

7 thoughts on “UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013”

  1. Here are MS Society research priorities as discussed at UK CFS/ME Research
    Collaborative Executive meeting on Monday (Oct 7)

    In 2012 we began a project to put people affected by MS at the centre of
    setting research priorities.

    It is crucial that research into MS answers the questions that are most
    important to people affected by MS.

    Through a partnership with the James Lind Alliance, we aimed to find the top
    10 research questions important to people affected by MS and healthcare
    professionals. After a year of extensively canvassing the views of a wide
    range of people, we have established the top 10 priorities for MS research.

    The top 10 priorities
    Why are we doing this?
    The process
    Steering group
    Partners and supporters

    The top 10 priorities

    Which treatments are effective to slow, stop or reverse the accumulation of
    disability associated with MS?

    How can MS be prevented?

    Which treatments are effective for fatigue in people with MS?

    How can people with MS be best supported to self-manage their condition?

    Does early treatment with aggressive disease modifying drugs improve the
    prognosis for people with MS?

    Is Vitamin D supplementation an effective disease modifying treatment for

    Which treatments are effective to improve mobility for people with MS?

    Which treatments are effective to improve cognition in people with MS?

    Which treatments are effective for pain in people with MS?

    Is physiotherapy effective in reducing disability in people with MS?

    Thank you to everybody who contributed to this process. This wouldn’t have
    happened without you.

    We will now be working hard to ensure these priorities are addressed by
    research. As it stands, 75 per cent of our current research reflects
    priorities in the top 10, which is a great start. For example we are funding
    MS-SMART, a ground-breaking clinical trial investigating whether three drugs
    can alter progression in people with secondary progressive MS.

    These priorities will complement our existing research strategy. We will
    continue to support research into the causes of MS, and treatments and care
    for people affected by MS.

    This is a major shift in setting priorities for MS research. Beyond the MS
    Society it is hoped the top 10 will help researchers select topics when
    developing applications, and influence the decisions of other research

    We will be keeping you updated on our work to address these research

  2. What came through from the 2002/2003 MRC Research strategy discussions was that many people in the ME community want a lot of the focus to be on biomedical research trying to understand the aetiology and pathophysiology of the condition.

    The biopsychosocial researchers tend to be less interested in this and are more interested in researching interventions that are claimed to be rehabilitative. (These can lead to patient-blaming if the patient doesn’t improve (also blaming parents with children); also can be used to say patients shouldn’t get certain supports (seen, for example, in submissions by the Kings College and Barts CFS services on the draft NICE guidelines (2006)).
    Coercion can sometimes be used e.g. won’t get insurance disability payment unless you have tried X).

    The Royal Colleges Report (1996) was an example of the relative lack of interest of the biopsychosocial school in biomedical research trying to understand the aetiology and pathophysiology of the condition (they recommended relatively little biomedical research be done; presumably they have a tendency to be wary of research which might be paradigm-changing and cause questions to be asked about rehabilitative approaches they might posit).

    Multiple Sclerosis isn’t psychologised now the way ME is. Claims that one recover with MS from CBT and GET aren’t in the mainstream that the way there are claims in ME or CFS (one person who has made such claims is Peter White of the Research Collaborative executive).

  3. I am particularly interested in what the criteria referred to here, are.

    “Applications for membership were considered in accordance with the criteria for the relevant type of membership. It was agreed that if there was a query regarding meeting the criteria, the applicant would be asked to provide further information to support their application.”

    And not to beat about the bush, I’d like to see all psychiatric studies designed to show support for the bps model dumped. The bps model has had its day – it is incorrect. Time to get rid of it.

  4. Thanks for posting the notes.

    Good to see the emphasis on including severely-affected/severely-neglected patients – these severe cases may be the most revealing from a research perpsective.

    I also appreciated the intention to work collaboratively with patients, and would like to know more about how that would work in practice:

    – “The Board also discussed its commitment to having a Patient Advisory Group or equivalent to enhance more collaborative working between patients and researchers. ”

    – “[conference] There will be a patient/researcher joint session focused on how researchers and patients can work more effectively together. ”

    Stephen Holgate has pointed out that in other fields patients are seen as a valuable asset, and they could be in ME/CFS too, given the chance.

  5. Research involving the severely affected looking at the aetiology and pathophysiology would be welcomed.

    I’m not sure I’d be particularly welcoming of trials of non-pharmacological interventions for the severely affected. Some professionals in the field don’t want to give patients supports and instead want to effectively force them to do some rehabilitative interventions (this attitude comes through in the Kings and Barts services submissions on the draft NICE guidelines, for example). People who are severely affected are particularly vulnerable in such situations. Currently they can claim such therapies aren’t evidence-based and can escape them to an extent.

  6. Here are five studies involving biopsychosocialists the NIHR is already funding.

    I don’t think we need a list of research priorities that justifies more funding for these types of research project.

    (i) Peter White’s GETSET:

    Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome/myalgic encephalomyelitis: a randomised controlled trial in secondary care

    (ii) Hazel O’Dowd’s Early intervention in fatigue: a feasibility study

    The intervention is based on the principles of cognitive, behavioural and graded exercise and is delivered by a trained therapist as an individual face to face session with telelphone follow-up sessions.


    (iii) Dr Selwyn Richards (& Ms Clare McDermott)

    This feasibility study will pilot an innovative, multi-disciplinary approach which has been developed through 2 years of collaborative work in Dorset between specialist health professionals, patients with experience of recovery, researchers and patient support groups drawing on the concept of ‘Modelling Success’, taken from Neuro-Linguistic Programming (NLP). In this process, insights from individuals with experience of recovery have been combined with expertise from specialist health professionals to: • identify recovery skills. • develop innovative ways of communicating these skills with patients who may have cognitive difficulties making it difficult for them to read, use a computer or engage in conversation.


    (iv) Another NIHR-funded project. GP education from FINE Trial- and MUS-associated researchers.
    Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: a qualitative study Kerin Hannon1*, Sarah Peters2, Louise Fisher3, Lisa Riste1, Alison Wearden2, Karina Lovell4, Pam Turner5, Yvonne Leech5 and Carolyn Chew-Graham5

    This paper presents the initial phase of the METRIC (ME Education, Training and Resources In Primary Care)

    METRIC is funded by the NIHR Research for Patient Benefit Programme


    We know the cost of the following

    (v) (£864,000) & (vi) (£321,861)

    £1.2 million for Chronic Fatigue Syndrome research Press release issued 16 September 2013

    Two new research projects that aim to advance treatment for people with Chronic Fatigue Syndrome [CFS] or Myalgic Encephalopathy [ME], which affects an estimated 600,000 adults and children in the UK, have been awarded funding totalling nearly £1.2 million from the National Institute for Health Research [NIHR].


    Dr Esther Crawley, Reader in Child Health at the University’s School of Social and Community Medicine, will also conduct a multicentre trial investigating the effectiveness of exercise therapy compared with activity management for mild and moderately affected children.

    Dr Crawley, who has been awarded an NIHR Senior Research Fellowship, said:
    “Paediatric CFS/ME is common and disabling, yet little is known about recovery, whether national guidance on treatment using exercise is helpful, or what treatment strategies might work for children who are severely affected. Results from this study will help us determine how many children recover, how long it will take and which treatments are effective.”

    The five-year study entitled ‘Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been awarded NIHR funding of over £864,000.


    Simon Collin:

    The three-year study entitled ‘CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services’ has been awarded NIHR funding of £321,861.

  7. Many of us parents /carers stated that we do not support prioritising more epidemiological research, when feedback was requested via the charities earlier in the Summer. (some of us were disappointed that a cut off date for giving our feedback was very short and not that publicised).
    As a collective we have the experiences, we have experience of the causes, and the effects. Many doctors have heard us describe all of these many times for many years; research needs to move forward.
    We are fatigued by reading more of this and descriptions of “what is”. The priority needs to be biomedical research; finding then trialling of treatments; (not trialling management strategies). And particularly for those with severe M.E.
    I, and all the parents I know have these same views.
    I am a complete layperson to the ‘political’ nature of these groups but the group above seems quite dominated with psychological and epidemilogical research supporters. The minutes above talk of patient representation, but how can parents/carers of those with ME who openly support biomedical research gain worthwhile access to such a collaborative?
    The MEA has always been extremely helpful and supportive.
    But what value can there be in going along with this juggernaut of apparently pre-decided intentions?

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